https://www.nature.com/articles/s41577-023-00904-7
https://www.nature.com/articles/s41579-022-00846-2
https://www.frontiersin.org/articles/10.3389/fneur.2023.1090...
Mild ME/CFS is usually associated with around 50% reduction in daily functioning. Moderate will usually lead to people being housebound and intermittently bed-bound. Severe and very severe are associated with a level of suffering that is hard to imagine possible.
An example of someone becoming severe is PhysicsGirl - Dianna Cowern.
The associated severe dysautonomia means that people are unable to sit or stand and often they can not eat or digest. They may require intravenous nutrition. Regrettably there are cases where the disease has not been treated appropriately and young people have died as a result. A recent example is Maeve Boothby-O'Neill and her father Sean O'Neill wrote in The Times with an interview with Maeve's Mother by Dr David Tuller.
https://www.thetimes.co.uk/article/my-daughter-couldnt-be-sa...
https://www.codastory.com/waronscience/chronic-fatigue-syndr...
I'm not questioning whether he suffered from ME/CFS but mortality is not reported in the Stanford data or what I've heard described of the syndrome.
It's hard to wrap my head around ME/CFS as he has described it being causative of organ failure. Did something happen? Is this a consequence of the therapeutic he tried?
Organ failure in a 37 year old without a history of end-organ dysfunction or acutely inciting event like a toxicity is incredibly unusual.
Life-Threatening Malnutrition in Very Severe ME/CFS (2021)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/
Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/
There are not many mortality studies and few ME patients have had comprehensive autopsies —
Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome (2016)
https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1...
Causes of Death Among Patients With Chronic Fatigue Syndrome (2007)
https://www.tandfonline.com/doi/abs/10.1080/0739933060080376...
Somewhat harrowing reading is Whitney Dafoe's account of becoming extremely severe —
Extremely Severe ME/CFS—A Personal Account (2021)
https://medicine.wustl.edu/news/repeat-covid-19-infections-i...
https://onlinelibrary.wiley.com/doi/10.1002/jmv.27627
https://bmcinfectdis.biomedcentral.com/articles/10.1186/s128...
I am asking about "long-covid", also called "post covid condition". From Brandon's own description he had what would be classified as "mild COVID-19 illness" and was never hospitalized. He had some persistent symptoms that may be attributable to "long-covid", this is very different from your sources.
I have never heard of a death from long-term sequelae in someone who has never been hospitalized.
> As a physician
Oh, you didn't mention that in the first post... I'm sure you know better than I.
The initial covid infection can be a "death blow" for some people, especially if genetically at risk for long-covid (as proven in recent studies)
Just like Brandon I had a near fatal covid infection in 2020, I was on 24/7 oxygen for two months and never fully recovered.
I've stabilized but it is clear I am on a slow but steady decline over the past few years and if this slope continues, I could end up like Brandon.
So if I die in a couple years from Long-Covid, are you going to argue it's not long-covid that killed me or the original covid infection?
Because the damage persists and is getting worse even without active infection.
There are several papers on premature aging (aka radical aging) from covid->long-covid, the ultimate final outcome of that is organ failure and death many years, decades, before one's time.
Look at his twitter and you'll see some of his photos, he was not well and that's three years later after infection.
https://twitter.com/BrandonGilles/with_replies
Covid basically finds every genetic and environmental triggered weakness in the body and doesn't relent in some people. That's long-covid, at least one kind.
He describes that he had mild infection both times and was not hospitalized.
> So if I die in a couple years from Long-Covid, are you going to argue it's not long-covid that killed me or the original covid infection?
I’m not “arguing” anything as this would suggest I have a viewpoint. I’m asking from a medical perspective if anyone knows of a reported case that investigated or described cause of death.
Multi organ failure typically occurs in the ICU in extremely sick people, with an inciting event. I’m not following how ME/CFS leads to that. It could be that I’m uneducated on this, hence the question.
You could swap “COVID” with many other diseases or pathogens and I would be similarly curious. It’s just an unusual progression in a < 40 year old.
> https://twitter.com/BrandonGilles/with_replies
Thanks for providing this, I read back until early June or so.
It looks like he was taking Difficid, presumably for CDAD. Severe C diff can certainly result in multi organ failure and death. Unusual in an antibiotic naive patient and I’ve not heard of a link with COVID.
He also in another tweet states he has hepatic encephalopathy. Is a sign of liver/end organ dysfunction. HE wasn’t on the linked timeline and is very rare in non-cirrhotics but has happened. This would typically be worked up looking for the cause. It would be medically interesting to see a liver biopsy results. Severe liver dysfunction could also explain multi organ failure and death.
Brandon clearly put in a lot of effort when he was alive to publicly document and detail his journey which has been informative for me. My understanding is that he was hoping to increase awareness and provide resources for others. I’m looking for a report to fill in the gaps between what he has shared and his unfortunate death which is medically very interesting.
This is not, and should not, be a debate about the validity of serious COVID illness or CE/MFS which has been established at this point.
This is a bit better: https://twitter.com/BrandonGilles/status/1686937347819233280
I can't rationalize how any of the symptoms he described, and having undergone many medical tests which were not described as indicating any end-organ dysfunction, would result in to organ failure which I've never heard of happening "out of the blue".
I fully respect his family's right to privacy and of course don't expect a full disclosure. The physician in me is very interested in learning more about what happened in either his or another case. From a medical perspective this is a very shocking turn of events that has not yet been described to my knowledge.
The only place I can find claims for organ failure are on conspiracy forums. I can't put much credence in the idea, yet.
I kinda regret not taking a deeper look at that website first but at least the news is out and people are talking about it and remembering him.
I wish there was a way to archive all his posts but of course now that's even more impossible given twitter's degradation
There is a huge discrepancy and a lot of detail missing between "developed Long-COVID symptoms such as brain fog, fatigue, muscle pain and shortness of breath" and "he suffered from multiple organ failures".
I tried searching but have not found anything (yes I know some death certificates list long-covid as a contributory cause in CDC data, but one can list anything on a death certificate). Does anyone have a source/case report explaining this or detailing a case?
(Please note I am not trying to start a political debate regarding COVID out of a man's obituary, I am genuinely curious if anyone has information about this as I've never heard a causative claim before)